CNS Follow Up Meeting

So yesterday I mustered up enough energy to order an uber to take me to my first follow up appointment (endocrine department). Id baked for the ward to say  thank you and Id been itching to go and drop it off in the hopes that the nurses i actually got to know were on shift and I could get the chance thank them properly instead of telling someone else to pass on the message, so I planned to go half an hour early. I timed it completely wrong and managed to get there about an hour early. And I didnt get to see any of the nurses. It was just the ward clark and the doctor i had to give the chocolates to last time at the nurses desk, so my visit back to the ward lasted all of 15 seconds and I had an hour, alone in a hospital, to kill.

i just went to where my appointment was and waited in the waiting room. My CNS called me in and after a kerfuffle with her having to try and get a last minute MRI for the moany man that was sat in the waiting room next to me via her pink phone (he didnt want to travel to the hospital again for an MRI and wanted everything to be done in the  same day) we began our 'catch up'.

She asked me how I've been feeling, what are the changes ive noticed etc. and I gave her the low down. I've been feeling more and more exhausted as the days go on. Although exhaustion is to be expected when Ive been on overdrive for god knows how long but it doesnt seem right that the exhaustion is increasing. I should be recovering surely ? As in, getting better. I have absolutely no stamina. Once I muster up the energy to start my day, by the time Ive put on some makeup I feel drained and want to go back to sleep. I'm also extremely weak when I'm tired. I often dont take my tablets until I need the toilet and Im forced to get up because, even though the glass and my tablets are only on the bedside next to me, I havent physically got the strength to lift my glass or hold myself up. Theres a window above my bed and when it rains and its slightly open the rain drips onto a strip of my bed. The other night i just lay with my leg catching the ice cold rain in an attempt to protect my duvet and mattress because i just didnt have the strength to pull myself up and reach to close it. I also tremor all the time. 

A couple other things were that I get very hot and very cold very quickly and my skin has got unbelievably dry. 

On my discharge summary in the section about advise for medication the section on Levothyroxine was duplicated. I had two boxes that said 100mg at 8:00 daily. For my other tablets that i take multiple times a day it was either split into a different box for each time, or all in the same box stating all the different times. Quite clear... so I just put the duplicate down to a typo. It only occured to me at the doctors on friday (a boring 'fill me in' appointment, but another hot doctor so i didnt mind) that maybe it meant i was meant to be taking 200mg. I did take two tablets in hospital and i vaguely remember Ben saying he was going to start me on 200 but Levothyroxine comes in 50mg doses too and I cant be sure of what Ben actually did start me on. My CNS said my symptoms indicate my Levothyroxine doseage is too low but she will need to test the levels in my blood before they increase it. So she planned to do it at the appointment I had at the PIU the next day.

Another couple things that I've noticed that are slightly worrying me are 1. I cant sleep at night. Im absolutely exhausted and constantly yawning (not great when youve got nasty ass chapped lips) but for some reason it takes me until about 2am to actually reach the relm of sleep. I lay for HOURS with a floppy body and my eyes closed but my mind just wont switch off. I really hope that reason isnt timmy 💔. And 2. Ive noticed a few unexplained bruises- which is a tell-tale sign of cushings. Only small greyish ones though so Im also hoping thats nothing big or extraordinary to worry about. My CNS said 'but thats normal for you' and inmy head i kinda thought 'but cushings is normal for me...???'. But she didnt seem too worried so i guess i shall surpress that anxiety.

On the up side my skin had cleared up, im less bumpy and most of my dark markings have gone, the whole of me is less swollen and my hair is finally staying in my head!! (Although ionly  have a few months to enjoy that cause radiotherapy is gonna ruin that one for me again. -_-)

Anyway so I was kinda itching to get the meeting wrapped up because I felt as if all life was slowly draining out of me (physically not mentally, im not rude✋🏽). I wasnt allowed to take any hydrocortisone (basically my source of energy) that afternoon or evening and i was already starting to feel it. We swiftly wrapped it up... She told me i wasnt entitled to any benefits (brilliant. I do not have the stamina right now to work and wont be given the chance to work anyway seeing as ive got appointments every other day and ill need 6 weeks off in a couple of months for radiotherapy, but thats life. Most countries dont even have free healthcare so Im just being greedy) and went to get Ben to prescribe me an emergency Hydrocortisone pack in preperation for Kemi teaching me how to inject myself the next day.